Thursday, December 15, 2016. Probably worth adding this to my “observations” from last night, but the timing of some of the things I saw and/or discussed with people today warrant a quick standalone post.
Throughout these last eight months I have often said (to anyone who will listen) that while this whole thing has sucked, it could always be worse. Along these lines, I love the famous quote from Regina Brett: “If we all threw our problems in a pile and saw everyone else’s, we’d grab ours back.”
What are your problems? We all have problems. And that is not to say that each of our problems are not real or otherwise important to address. For me, the takeaway is making sure you keep your problems in perspective because I truly believe things can always be worse. This certainly does not solve your problem(s), but when I put my problems in context — relative to problems that others are dealing with — my problems seem easier to solve. [This is all new for me and I am not giving advice or attempting to trivilaize anyone’s problems. Simply sharing my view and new perspective.]
We checked the box on another chemo treatment today (just three more for the year), got the “green light” to stop the twice daily Lovenox shots, and started on a medication to reduce the significant swelling in my feet, ankles and legs (from the steroids and daily chemo pills). I was in a good mood heading into chemo even though I couldn’t tie my shoes and had to wobble down the hall. [As an aside, Jen just pointed out (and I am well aware every time I put them on), that I am wearing sweat pants today that I bought on August 28, 2004; the day we got married. Jen told me she was wearing sweat pants on the plane when we left for our honeymoon that next day. My mother always told us we needed to “dress up” when we got on a plane, so this was new to me. I made my Dad walk over with me to the mall near the hotel, and the rest is history. The sweats themselves have seen a better day but they are still the most comfortable pair I own.]
As I waited to be called for chemo, my Mom and I sat in the “East” waiting area (she drove me back and forth today (no comment on the driving Mom)). This is where I always sit. The “main room” is intense and crowded. In fact, I reminded my Mom today that this was the same waiting room we sat in (and where I passed out after my first and only bone marrow test) on April 27, 2016. She remembered.
There were two middle-aged men sitting in the room. I said hello to both and made a comment that one of the guys had a nice set-up (he had an effective work station in the corner). [I am a friendly person. I like people and I enjoy talking to everyone. Sure there are times I am quiet, but I am a big subscriber to the “it is easier to say hello theory,” and it inevitably leads to conversations and hellos down the road. These last eight months have been no different (whether it be the hospital staff or people in the waiting rooms/hallways).]
The guy with the set-up commented that he was trying to “log in” and work, but that it was not a secure network and it was restricting his ability to get anything done. We discussed how silly that was for a few minutes and I said hello to a few of the nurses and doctor assistants that walked by. The other guy commented that I seemed like I was in a good mood. I said I was both in a good mood and very lucky, which led to a discussion about “my story” and status. Both guys commented and smiled. I then made the mistake of asking the guy (who asked about my good mood) how we was doing. When you ask that question in a cancer lounge, you have to be prepared for the answer. His response was “not good.” The guy with the work station suddenly got busy. To make a long story short, while he did not have cancer, he was being treated for a rare genetic disorder and nothing seemed to be working to solve the issue for the past eight months. He has been sick and unable to work, which is a problem because he owns his own business. To add insult to injury, he learned yesterday that his insurance company was changing his plan and it was unclear if he would have coverage in 2017.
As I was saying I was sorry and shaking my head, a man with no legs in a wheel chair came into the room with his wife. I noticed he was wearing a Notre Dame football t-shirt (he sat right in front of me), and I immediately asked him if Brian Kelley was coming back. It led to a five-way discussion (me, the two men that were there from the beginning, the man in the wheel chair and his wife (my Mom sat quietly in the corner) — about college football and college athletics more generally. I was wearing a North Carolina hat (which I wear often simply because it fits) and we ended up talking about ACC basketball and the fact that the Barclay’s Center would host the tournament this year. The wife of the man in the wheel chair got excited because she said her son, who graduated from NYU, got them tickets to that stadium last year and they loved it. The guy who was talking about his business failing and losing his insurance jumped in to mention that his daughter played college soccer in Vermont and he never missed a game. Even the guy buried in his work station jumped in when I mentioned they needed to watch an ESPN 3o for 30 about the original coaches in the Big East Conference as a follow-on comment to the man in the wheel chair telling everyone that he once got to met Lou Carnescca (the legendary St. John’s basketball coach). A moment later they called my name and I said goodbye to everyone. While I was happy to leave the conversation at this point instead of when I had nothing to say other than “sorry,” it was not lost on me that the man in the wheel chair with no legs was the reason the conversation ended on a better note.
My chemo session was in the “Fast Track” room today. It is an open room where six people can get treatments at the same time. Such a personal thing in an open space can be awkward, and I try not to stare. Sometimes people will engage in conversation (I spoke to a young woman yesterday (late 20’s/early 30’s) who had a kidney transplant a few months ago and was still recovering, getting treatments etc. She was unable to work because she has been sick and her blood counts are low.
Today was a particularly tough day. There was an older man getting shots right across from me and he was talkative. But he left before I started. Next to me was a little girl — maybe 12 or 13 — with a woman who I believe was her mother. The mother basically said nothing the entire time. She didn’t look up from a notebook she was scribbling in. The little girl was not doing well. As it turned out, she had a liver transplant recently and this was one of her first follow-up treatments. She was getting some type of infusion for more than 5 hours. And the doctors and nursing staff had to rush in because she was having trouble breathing. The little girl engaged in the dialogue with the doctors and she was very sharp. She knew exactly what medications she was taking, when she had taken them and all the details in between. But this little girl was hurting and I heard her tell the nurse (not her mother) that she was very scared. The mother whispered a couple of things to the girl, but I never really heard her speak or raise her head. My chemo ended, my mother left to get the car, I thanked the nurses and staff who I have come to know so well, and I wobbled out of the room shaking my head yet again. I have been thinking about that young girl all day long……
It was announced this afternoon that Craig Sager passed away at 65. I wrote about Craig Sager on July 18, 2016. He died after a battle with acute myeloid leukemia starting in 2014. A terminal diagnosis didn’t stop Craig from undergoing three different bone marrow transplants and lots of chemo treatments, which enabled him to continue to do what he loved for as long as he could.
Being told it is only a matter of time before you die is a problem that I suspect many of us would not be so quick to “grab back.” But Craig Sager took a different approach (as he explained when he was honored with an ESPY award this summer).
“Whatever I might’ve imagined a terminal diagnosis would do to my spirit, it’s summoned quite the opposite — the greatest appreciation for life itself.
“So I will never give up. And I will never give in. I will continue to keep fighting, sucking the marrow out of life, as life sucks the marrow out of me. I will live my life full of love and full of fun. It’s the only way I know how.”